Friday, September 16, 2011

Something new....

This week has been exhausting. I knew it would be when I reviewed the calendar last weekend. It was full of day to day stuff, doctors appointments, the children's sports, and youth group. For the average gal this would just be tiring, but I am not average. I suffer from a handful of illnesses that make things much more difficult. On top of being physically busy, my mind has been pre-occupied with health issues.

Last week I picked up a copy of my medical records from the rheumatologist that I fired. I have an appointment with  a new doctor in December (of course it takes months and months to get in with a specialist, sigh). The first thing I did when I got home was read my records. There weren't many pages to it since I had only seen this particular doctor a few times. Nothing was out of the ordinary, that is until I got to the very last page. An MRI report that I had done last August. Last, as in the year 2010. That is 13 months ago. An MRI I had done of my brain. Incidentally, that same day I also had an MRI of my spine that I was unable to complete due to an overwhelming feeling of suffocating. Anywho, this particular report of my Brain showed abnormalities. Hmm, that is strange since my neurosurgeon never mentioned anything. I clearly remember last year when my neurosurgeon called with the results of this MRI. He left a voice mail stating that I had a brain, (it is always funny when surgeons try to be funny!). There was some evidence of some swelling. Let me back up just a moment and tell you the reason I had this particular MRI.  It was because I had a c5-c6 fusion at the end of June and a few days prior to the MRI I smacked my head on the car jam, resulting in a concussion.  Because of the brand new hardware in my neck, the Massive headache smacking my head caused and some new tingling in my arms...the MRI was ordered. My neurosurgeon suggested I rest lots and asked me to see my neurologist.

Neither of these experts ever mentioned that my MRI CLEARLY showed findings of mild Chiari Malformaion I. In a nutshell, Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.

Um what? How in the world did that pass by my doctors? Well let me tell you. I called my NS as soon as I could breathe again and his reply, through his assistant, was that because it said mild he was unconcerned. And also, because it was found on a brain MRI and not a cervical MRI. Hmm.... I have several issues with this response. From the research I have done, and oh boy have I done my research, showing Chiari on a MRI is so important! With these findings and with the many symptoms I have this needed to be addressed!. Chiari does not go away, it progresses and there is NO CURE. The doctor should have taken into account that I can check of a majority of the symptoms. The doctor should have at least mentioned it to me and told me to be aware of this situation and come in if any new symptoms arise. The doctor should have at least told me to come in for another MRI in a year or two. But no. He choose to ignore these findings. Period. He took away my right to be knowledgeable about MY BODY. The doctor should have reread my MRI of my spine, from May of 2010, where it is noted that I have low lying cerebellar tonsils.

What am I going to do with all this information?

With the knowledge of the mild Chiari Malformation I: I will continue to obsess, err education myself. Continue to be aware of my headaches, numbness and tingling of my face, pressure in my brain and neck, balance issues and a myriad of other symptoms. I will seek the expert opinions of other professionals, maybe someone who has dealt with this condition a bit more than my current doctor.

With the knowledge that my doctor discarded something so important: This one I will have to think about. I liked this doctor. For the most part. I remember feeling "dismissed" after my fusion. That the headaches and other issues I had were "in my head". sigh

This was just one small portion of my busy medical week. I also had my first Physical Training appointment for my right knee. I met my new Primary Care Physician this week. I liked her! I had a follow-up appointment with my hand surgeon. And I scheduled my 7th surgery in less then 3 years.


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